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Topic: Unusual Cholangio Guy - Survivor Against the Odds

TO THE CHOLANGIO GROUP

I could never find many cc’s and am glad my assistant took my dare and found this site. My case is fairly unusual, but as a fellow cc, I feel more at home here than anywhere else I’ve seen. So far I’ve just read 25 of the 49 postings, and I especially like the interaction and detail as well as the involvement of the site managers. I must admit that here as elsewhere there is a sense of incompletion as situations are described but seldom to later on or an end. So I read, “Bob tried treatment XYZ…” and that’s two years ago. I don’t read, “And he’s now in remission”, or “He’s fully recovered and playing hockey daily” or “He lost his battle and passed on two months ago.” Without reading how things turned out, I surmise that they didn’t turn out well and the full story just isn’t being told because it’s too painful and maybe seen as not productive. But I would sure like to find out from beginning to end. How do other readers feel about this?

Up to September of last year I was extremely healthy except for a doctor-caused bad toe leading to a compromised walk, inability to use a treadmill or run, hip problems, etc. Then I had a bout of indigestion that after 10 days did not clear. My docs are supposed to be the best in Beverly Hills, and while pretty good, they still made and make plenty of mistakes. They saw it as a gallbladder problem, so I had it out. But when they went to wash down the common duct, it splashed back. So next day I’m under GA for an ERCP and when I awoke, they are all there staring at me. At that moment I wish they had said, “You have big, fat cancer of a terrible type and are in huge trouble” but they mealy-mouthed and sent in a liver guy with his team. He said I needed a Whipple, and who am I to say no?

Making a very long and detailed story somewhat shorter (happy to fill in any details wanted), I learned of a surgeon at Mass General who is a pancreatic specialist and preferred that to a liver team, so I flew there for my Whipple. The LA team planned me to lose 1-2 L. of blood necessitating transfusion, etc.; the Boston guy was famous for great work and I lost just 200 cc. of blood. He’s one of those “magic hands” guys and among other things never had me evacuate my bowel before surgery or gave me any antibiotics afterwards. Damn unusual; I’ve had 10 days of Keflex for a splinter removal from my thumb. I was in hospital 8 days after the Whipple and in a hotel room for 30 days in Boston before the drains were out and I cleared for flight back to LA where I live.

At this point I was pretty beat up. A Whipple is maybe the King of Destructive Surgeries even though mine was well-done. The anesthesiologist used an epidural so the three operations I had within a month didn’t add up to more than they did, which was already plenty for me. I was “stupid” for months and it otherwise took a long time for my body and mind to recover. I was in great shape before the Whipple and am glad I was as this takes so much out of oneself. Chemo and radio were recommended, but as a T1, ‘watchful waiting’ was an option, and I took it.

I should mention I took care of my mother, father, two stepfathers and others in their last times, several dying of cancers (my Chinese father-in-law died of ductal cc just two years ago). I had resources, medical knowledge, contacts, money, energy and smarts to do a good job as a sort of one-man Hospice dude. I helped them to die on their terms as much as could be done. From this and other experiences in life, I have developed a rather unusual take on life/death and now it was time to apply it to me. I see life as 1, and I dig it. I see death as 3, and I’m OK with it. 2 is the in between, ideally some treatment where one is helped by the medical community to improve and get better. But in reality 2 can be a horrid zone of prolonged agony where energy and money is drained from the doomed patient and their family, where friends and others are put upon badly. Modern medicine can prolong life quite a bit, but I never want to become a piece of meat staying around and doing little but making heartless hospital accountants happy. I’m happy to live and accepting of death; I’m not willing to pause protractedly in between. I want to be a like a cat or bear- live at nearly full throttle almost my entire life, then die. Modern medicine can frustrate this desire. What I desire is QOL/EOT (quality of life over extension of time).

When the path reports came from Boston to LA, I was reassigned as a T3 as cells were in small nerves and large veins. Then a scan showed 4 large masses in my liver. Metastases obviously. I was reassigned as a T4, M1 untreatable, incurable and given a few months to live. But various docs wanted to poison and zap me anyway; I said no and planned to travel feeling I had left good time, medium time, bad time and then death. I made plans. It was 5 top docs who came up with the diagnosis. But I was skeptical as was the gifted surgeon in Boston (Professor at Harvard Med School and Director of Pancreatic and Biliary Surgery at Mass Gen). So I had a liver biopsy done. It went wrong (as have so many things in my and others’ medical lives) and it was undiagnostic but bruised my liver sack so I couldn’t take a good breath for 2 weeks. Then a second one. Again, unrevealing. Those slides are now back in Boston, but maybe they took from the wrong places so nothing will be learned anyway- who knows.

The Boston surgeon says they are likely not masses at all but a combination of empty space and fatty tissue left over from an infection from my gallbladder last year during a period I had no scans done. And sure enough my CA 19-9, 98 before surgery, has been under 8 the last 3 months; last Friday it was an all-time low of 5.9. Scans show the phony masses unchanged. Still, I am a CC, extrahepatic T3, and all the statistics I can find on this are grim with an 80% +- 20% of this coming back to surely kill me, 80% within 2 years, 18% within the next 3 years and 2% after that (correct anything I’m writing- facts are hard to come by). In all Los Angeles at the largest onco center, associated with huge Cedars Sinai, there’s only 2 CC’s I can find, one T2 and the other T1 and they are both intrahepatic, so they are luckier.

I threw a party for myself and friends figuring there would be one anyway and why shouldn’t I enjoy it while still alive. I called it my “Ain’t Dead Yet” soiree and it was good. Despite entreaties from various docs, I refuse to treat. I eat lamb chops (bad), kale (good), see off-beat healers, take unknown Chinese powders, nap, pet my cat, swim & dive and exercise like crazy. I will be 65 in a couple of months and can still do handstands. I have a trick I invented long ago on YouTube you get to by going to Google, then in the searchbox entering “Manna Man 64”. That was me in May, 2011. I can once again do that trick but not quite as well. If I die, I want to go out as the healthiest corpse around.

Then there is the money factor. Here in the USA, healthcare costs and costs a lot. My out of pocket medical expenses on this are over $50,000 and my alternative medicine costs are high. I have to fight with my insurance company over things that should be covered. My nest egg is getting eroded. The irony is if I’m to die soon, I’m rather rich, can spend lavishly and leave my daughter something significant for a young person. But if I beat this cancer and work to do so, I’ll run out of money sometime before my body fails. I worry more about waking up at 72 or 77 with no cash and just social security more than I do just dying a natural death. The default system is to both drain me of all my money and my health while “trying to cure” me. I have seen several cases of this, and I pledge not to become one myself. In the rest of the developed world this condition of things would be considered an atrocity, but here in the money-mad USA it’s the brutal reality. I may be able to beat cancer (or not) but I’ll never beat rapacious capitalism, so adjust to it I must with hard choices faced and made. Once again, I’m rather alone in my views as many with whom I grew up are so rich that their money could last indefinitely, so they obsess over health as defined by longevity and strive for immortality. I just try to live as well as I can for as long as I can. For those with less money, less insurance, fewer resources, worse conditions, diseases of degeneration instead of mine with its potential sudden plunge or a more clingy approach to life- well, I feel sorry for them, for they are really in a fix.

I am taking a 19-9 every 3 weeks and an MRI every 60 days. If either of those goes bad or I develop symptoms, I will activate my Bucket List and quit everyday things and travel during my remaining good time. Then I’ll return home for the medium time, race through the bad time and then die.

I respect everyone’s decision to do with their life what they wish, including treat, not treat, change one’s mind, go all-out to extend time or throw in the towel at any point. With my history, I seek to avoid 2 as described, and if I can’t live as 1, I’m ready to get to 3 with no complaints or regrets. As hard as it is to find fellow cc patients, you can imagine it’s even harder to find anyone with my attitude. I hope I am not coming across as glib, in denial or foolish, but I know that may be the impression I could leave in this writing. I have a sense of humor that includes my own illness and highly possible death from it, and I won’t give it up.

Best wishes and hopes to my fellow cc’ers, their families and loved ones. Peace and love. Jeff

Re: Unusual Cholangio Guy - Survivor Against the Odds

Welcome Jeff!I love your outlook as it so closely resembles my own and my husband's. I am not a cc patient but the surviving spouse. There was another Jeff on this board with much common sense and good attitude such as your own. As I do to all people on this board, I send to you very positive, healing energies. Namaste,Karen

Re: Unusual Cholangio Guy - Survivor Against the Odds

Jeff....Nice to see you finding your way to our site. When cancer touches our lives, it forces us to take a good at what means most to us. You have done so. Please, stay with us. We care, we love to be inspired, and we are connected in a special way. Hugs,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Unusual Cholangio Guy - Survivor Against the Odds

Hi Jeff,I love your attitude - wonderful. It makes me so sad that people in the US end up spending their life savings on being ill. In the UK we are losing our national health service which is also sad.My dad had a whipple like you and has just had his two year clear scan today.I find your four masses in your liver baffling - were these seen immediately after your surgery?I look forward to reading more from you and hope that something gets resolved quickly re your liver...Here's to no 1: life as long and as happily as possible. You've certainly made me stop and think about valuing each day.Kate

Re: Unusual Cholangio Guy - Survivor Against the Odds

Karen....nice to see you coming out of obscurity. How are you? BTW I will be in Philadelphia in May and hope to meet up with you.For those that don't know - Karen has donated two CCF banners which have travelled along to many conferences we attend. They are really holding up well, Karen. Thanks again.Hugs,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Unusual Cholangio Guy - Survivor Against the Odds

Hi Katja,

I always admired the UK system and am sorry to hear that it might be changing. The four masses appeared two and a half months after the whipple and were diagnosed with great confidense as large metasteses by five top onco radiologists, academicians, and clinicians. It was only Dr. Carlos back in Boston, the smartest doctor involved in this whole thing, who knew the right answers, and he hadn't even seen me in two and a half months. The lumps turned out to actually be the vestiges of the gallbladder mischief in October which had set up four seeds in the liver which then expanded as infections, and then as my body conquered them, remained as a combination of empty space and cirrhotic-type tissue. Future scans will probably show they don't change at all. If they DO change, then something else, and dire, is afoot.

But this was yet another, and terribly significant, example of how top docs can agree and be totally wrong and lead one to false conclusions and to embark on actions that are ill-founded.

I'm delighted to hear about your dad and hope I emulate him at a two-year point I hope to reach. The money aspect of all this is at least as terrifying and disgusting as the physical aspect and in some ways more challenging to deal with.

Re: Unusual Cholangio Guy - Survivor Against the Odds

Hi Karen,

I feel very alone in that I have not found CC people, Whipple survivors, let alone hand stand performers with my advanced level of CC. Maybe I could start off by communicating with your dad or with you more about your dad as the one Whipple guy I spoke to was 8 weeks in hospital with lung blood clots, re-infections, re-openings of the incision, etc. I was only 8 days in hospital and psychotic to get out. I seek fellow Whippleers. Help me find them.

Re: Unusual Cholangio Guy - Survivor Against the Odds

Okay you guys! (Marion and Jeff) I don't write much these days because I find it very hard to express my feelings, but I do read here everyday. I feel so connected and yet at loose ends...very hard to convey. Jeff you will probably be hearing from Lainy as her husband had a whipple. Rob (my husband) did not qualify and he opted for cyberknife. Marion - you betcha I will see you when you come to Philadelphia. When are you coming?? There is a wonderful event on the steps of the Art Museum (you know...Rocky!) on May 20th. We do yoga on the steps (outside) in honor of breast cancer survivors...it is very humbling. Last year there were 1,000 people - quite moving. I would love to share the experience with you. In peace,Karen

Re: Unusual Cholangio Guy - Survivor Against the Odds

Hi Julia,

My biggest regret is never having been to England, and now that I get such thoughtful and articulate replies from Brittons, I really have to work to get there. In fact, if my tests ever show that I'm going south, I will activite my Big Bucket List immediately, and London will be my first stop.

I love that you liked my 1, 2, 3 Theory of life, death, and the in between. For those of us who have watched loved ones languish in 2, it's easy to wish to avoid it at all costs.

Having a grave disease or being the care-giver to someone who does are different yet related. I admire your caring for your sister and hope she does well.

By the way, who amoung you out there is T3 like me, and who is extra hepatic like me? Who is choosing not to undergo conventional treatment like me and why?

Again, I find this group the snappiest and bravest of any group I have ever found on the internet, and if I had to have a deadly disease, at least this is something good that has come from it.

Re: Unusual Cholangio Guy - Survivor Against the Odds

jeff,

Welcome. I am also a cc and whipple survivor.

I do hold many of your attitudes toward life. I have had cancer 3 times and each time., up until this one, the treatment was not bad and I was able to move beyond it. This cancer is harder because of the bad stats, but I am a 2 year survivor and moving into the better stat side of things.

I had your same frustrations with unfinished stories...I even went so far as to google and facebook search people in the "faces of cc" to see where their story ended (or if it had). I stopped that after awhile.

I have never been able to do handstands but I have run a marathon and try to stay active. I have perfected the art of sitting on the couch and watching tv but honestly I think being in shape when getting this disease is key to surviving with good quality of life intact.

I am also getting a graduate degree in Counseling at the age of 56 and changing careers. it's never too late to pursue a passion and change course.

Love your attitude, it can only be a positive thing in your cc journey.

Re: Unusual Cholangio Guy - Survivor Against the Odds

Karen...I have been accepted in the DIA Patient Advocate Fellowship Program and will arrive on June 23rd - leave again on June 28th. The schedule is tight however, I must and I will find the time to meet up with you. Let's stay in touch. You have to tell me all about your yoga sessions and more.HugsMarion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Unusual Cholangio Guy - Survivor Against the Odds

Hi Jeff,

Welcome to the site. Sorry that you had to find us all but glad that you've joined in with us here as you have come to the best place for support and help out there for CC. And thank you so much for going into such detail and sharing your story with us all. I love your writing style and your sense of humour and please do not change that at all! And no, I do not think that you are coming across as glib at all.

A sense of humour is such a great thing, and is nothing to apologise for. My dad too had a good sense of humour and was a great teller of bad jokes. He found each and every one of them funny, even if we didn't at the time! As for doing handstands, well I am 40 and tried doing that many years ago with disasterous results, so never again!!! So good on you for being able to do them and for putting me to shame on that one!

Looking forward to hearing more from you and reading your posts, and please know that we are all here for you. And if you do come to the UK, then you really have to come to Scotland!!

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Unusual Cholangio Guy - Survivor Against the Odds

Hi Jeff,

I feel like I already know you after your introduction. You sure do add some spice to this site!! I like your zest for life and that you want to live life to the fullest, not being sickly and a burden. At least, that is the way I took your post. I know my daughter, Lauren, wants to live her life to the fullest, and she would not be happy lying in a bed every day. You are a special man and I wish you all the best. I look forward to reading future posts from you. Take care and God bless.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Unusual Cholangio Guy - Survivor Against the Odds

JEFF, welcome to our extraordinary family of the bravest and most caring people in the world. I LOVE YOUR Introduction! Are you a writer? I don't find you glib at all as you remind me of my Teddy (husband). He had an aborted Whipple in August of 2005, then a month later the real deal of a Whipple with clean margins. Three years later the CC returned to where his Duodenum used to be and it was zapped with Cyber Knife. 2 years later it returned again to the same place. He fought the great battle but passed December of 2010. The Whipple bought him 6 years and he was then 78. He chose quality over quantity. You have a great attitude and that means so much in this fight. Teddy had strengthened himself as you have. It was like, OK, now we know what it is, let's take care of it. I would say he had much the 1,2,3 approach but number 2 was hitting golf balls! He was at peace with himself and we always tried to be realistically optimistic. If you need to talk feel free to e mail me and I do look forward to your next post.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Unusual Cholangio Guy - Survivor Against the Odds

Hi Jeff,

Welcome to the forum.

You wanted to meet extrahepatic, Whipple, T3? That would be my wife. Can you talk to her? Not quite. She knows this place exists, but she doesn't come here. Doesn't have the mental strength to deal with up and downs of CC forum. In addition to being her caregiver in real life, I play the ambassador role in the virtual space. Whenever I see a positive uplifting message, I email it to her. She already saw your handstand!

My wife's claim to fame before Whipple was extreme fitness. Okay, claim to fame in our family. She rode exercise bike every day, at the top level of resistance, with ankle weights attached. One year after diagnosis, her resting pulse rate remains in mid-fifties.

Unlike you, we agreed to do both the zapping and the poisoning. Zapping - due to microscopically positive margins. Poisoning - due to positive lymph nodes. I'm sure you know the code words. R1 and N1.

I can assure you, we are not the types who follow doctors' orders blindly. I think I read every single CC study published in the last 10 years before we gave the consent. I found enough stats to support our decision... BARELY. Without a question, quality of life goes out the window the moment the zapping starts. But, our circumstances are a bit different than yours. Our daughter is 13. For us, quantity of life is just as important as quality.

If you look to the left of your computer screen, you will notice that we live in Ottawa, Canada. As I'm sure you know, Canadian medical system is the exact opposite of yours. No private money allowed in any shape or form. On one hand, it's great... we don't have the stress of dealing with private insurance companies. On the other hand, our system lags behind in terms of innovation and capacity. Want Whipple? Wait one month in line. Want PET scan? Not available, due to lack of evidence that it improves survival. Real reason: government is too broke to fund PETs. I can go on and on and on, but your introductory thread is not the place to debate healthcare models.

Jeff, if you want to follow people's stories, here's a little forum trick. Click the account name of the person you want to follow. On the next page, click "View all XXX's posts" or "View all XXX's topics". You will see the posts or the topics in reverse chronological order.

Re: Unusual Cholangio Guy - Survivor Against the Odds

Jeff,

I really enjoyed reading your posts and learning about you and how you are dealing with life & CC. I love your attitude and outlook on both life and death. It is very uplifting.

My husband lived his life much as you describe. He lived life to the fullest and even kept going when his symptoms began. He died less than two months after his first symptoms were manifesting at the age of 62. I now also subscribe to your 1-2-3 way of life and death. I am not afraid to live but I no longer fear death either.

Thanks for joining our special group. I look forward to hearing more from you on your journey. We are all here for you if you need us and I hope you will continue to post as I think your words of wisdom are a great asset to this board.

Lots of positive thoughts coming your way.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice. You should always seek the advice of your physician or other qualified health care providers.

Re: Unusual Cholangio Guy - Survivor Against the Odds

Hi Jeff,

Welcome to the family! Your introduction was interesting and I look forward to your future posts. You're right about the medical costs--outrageous. I know we have spent over $50,000 out of pocket so far, and the bills keep coming. My husband is the one with ICC, and I would like to keep him around, so I guess we will continue to pay for as long as we can. And, we're not rich by any means. Keep your positive attitude because I believe that plays a big part in fighting this beast. Sending well wishes your way, PeggyP

Re: Unusual Cholangio Guy - Survivor Against the Odds

Hi Randi,

I am delighted how many positive responses I'm getting when I expected a rash of "You're a punk; listen to your docs and do what they say and don't be a wise-ass."

3 cancers?? Wow, what a record (that no one wants). You must be very strong. Am I right that it comes back in 2 years 80% of the time, in the next 3 18% of the time and only 2% of the time thereafter? I am at month 4.5 and striving to get to month 24 for a sort of milestone.

Glad you too were frustrated by stories without resolutions. But this site is full of informed users and people will to share their stories as far as I can tell.

I refuse to wither and decline. I'm going out in a sudden drop or staying around just to be aggravating. My second dinner will be titled, "I'm still around, so f**k you cancer, it's you who can drop dead as I'm not going away quite yet". All these cases of the hopeful eroding away before my eyes were just heartbreaking to watch or be part of and whatever happens to me, that won't be it.

Good luck with counseling as good ones are surely needed. Alive means it's definitely not too late.

I haven't run in 9 years after a punk doc wrecked my foot. Up to now, 95% of my complaints were about that. It's very hard to stay in shape when you can't even walk right. But you're right about being in shape. All the docs in Boston said I was right to be in top shape going into the Whipple. Those in medium shape come out wrecked and those in bad shape die on the table or are refused. It's a long road back from a Whipple.

The information expressed is not medical advice. The discussion boards are not intended to replace the services of a trained health professional or to be a substitute for the medical advice of physicians or other healthcare providers. Read the full disclaimer.